Met my very nice Oncologist yesterday.
Further testing has shown my Adenocarcinoma is a rarish (5%) subtype called mucinous (PMA).
I’ve been checking it out since then, but won’t have another appointment with the oncologist….. there is not fully comprehensive research into it yet. But have found out it’s probably some sort of gene variant (or something) and it can affect the efficacy of chemo and RT.
They’ve definitely decided that SABRE RT is the way for me to go….. but as I hadn’t even heard of PMA, I wasn’t in a position to ask more about this.
i did ask about the impact of my EDS on treatment and also the effect of RT on my EDS Symptoms. There’s even less research on this ….one strand says no impact on side effects;, a second strand says it increases likelihood of worse and longer lasting side effects; yet a third refers to a worsening of EDS symptoms around joints and pain. We just have to hope for the best….
I guess nothing is certain with cancer and these are 2 other uncertainties to contend with….
i feel a bit like I’m on a production line going from one station (consultant/department) to the next and so on. So the respiratory consultant/department has done with me, the oncology consultant has done with me (though he’ll be working out my treatment programme/plan. ). Next, to radiology for CT scan and treatment preps. I know I can contact my cancer nurses when I need to, but it seems strange not to have an overall consultant responsible for me. After RT, I Will move further along the production line, again, to the surgeon responsible for operating on my other lung.
Apparently lots of patients delay their treatment ‘til after Xmas, so it should be fairly quiet there (and hopefully parking will be easier!)
sorry for the moan….
Hi Rosedeec1bf9b please do not apologise for having a moan, this is exactly the right place to come and off load.
My lung sarcoma is rare, I was only the 2nd patient my oncologist had treated when I was introduced to her in 2014, so I do know how it feels to be the unknown.
It does feel like you get passed around a bit at the start of diagnoses and treatment, but you may find that after radiotherapy and surgery, you will continue appointments with your oncologist. They will be overseeing your treatment, and yes the MacMillan nurses you have been assigned are your go too. Please do call them for any worries you may have, they are worth their weight in gold!
Parking at the hospital can always be a problem. My hospital allows cancer patients to park without charge, so it will be worth asking if your hospital also does this.
SABR wasn’t around when I had my radiotherapy 11years ago, so it just shows how far cancer treatment has come. Good luck with the radiotherapy. Let us know how you get on.
